Does illness define you? I’ve joked about this before, but it’s worth serious consideration. How much of a part of you is your health? And how much should it be?
Plenty of people identify with their illness enough to name themselves after it: diabetics, celiacs, Crohnies, Lymies, spoonies. The use of these names is vehemently opposed by others who consider them dehumanizing. “You wouldn’t call yourself ‘a cancer,’ would you?,” they prod.
It’s a fair point, although many do call themselves “cancer survivors”—another way of identifying themselves by their disease. (Also, according to Wikipedia, some folks with terminal cancer reject this name in favor of cancer “diers.” I was unable to independently verify the name is used by anybody outside of Wikipedia. Have you heard of this?)
Look at just about any medical condition and I’m willing to bet you’ll find a subculture and nomenclature to go with it. You’ll find people affected by the condition who don’t participate in the subculture (or who don’t even realize it exists), and you’ll find people who have thrown themselves body and spirit into it. You’ll find people who hate that the subculture exists, and people who can’t imagine existing without it.
And in between you’ll find lots and lots of people totally confused about how much to participate, what to call themselves, and how much to allow their condition to matter in their lives.
Diagnosis identifies the disease, but we have to decide, afterwards, how to identify ourselves.
Author Hilary T. Smith, in her book Welcome to the Jungle, suggests diagnosis is like waking up one morning to find “a big old snake-eating-a-unicorn tattoo” on your bicep.
Seeing the tattoo, she writes, you might react in several ways:
Underidentification: “Ho ho ho! This is surely but an amusing temporary tattoo placed on me as a prank. It will certainly wash off in the shower.”
Medium-Low: “This tat is real, but I am going to wear long-sleeved shirts for the rest of my life to cover it up.”
Middle: “Living with this tattoo is going to be a b**** and a half, but it’s also kind of dope.”
Medium-High: “Short sleeves for me, baby.”
Overidentification: “This tattoo defines me, man. I’m going to tattoo the rest of my body with snakeskin and have a horn surgically implanted on my head.”
(Smith, Welcome to the Jungle. Conari Press, 2010)
The book is about bipolar disorder, which I myself don’t have (and no, I’m not just underidentifying). Still, especially as I got to the end of the list, I knew this applied to me.
Although I prefer not to call myself “a celiac,” I do give celiac disease, and being gluten-free, a lot of space in my life and identity. Sometimes, I wonder whether I’ve given it too much.
For example, when I renamed my Twitter handle @spruestory, I wondered if that was taking it too far. I mean, that’s my only Twitter handle, and it’s now named after my celiac disease blog. Was this really how I wanted to “brand” myself? Would I look back one day and wish I hadn’t?
Clearly, I decided it was worth it to change the handle (and that Twitter isn’t worth so much existential angst). After all, I’ll have this disease for life, so I doubt I’ll be looking back five, ten, fifty years from now and thinking, “Gee, I wish I hadn’t told everyone I had celiac disease.” Unless the whole world goes gluten-free or they discover a cure, five, ten, or fifty years from now I’ll still need to be upfront about my disease. I’ll still need to announce it on dates, to new friends in response to dinner invites, to strangers at restaurants before I order, to bosses and colleagues at work. It may not be the first thing I’ll talk about, but it will come up.
But will I one day wish I hadn’t talked so much about celiac disease? Will I wish I had identified with it less? Maybe. I wish it already, sometimes. But, as I said, this disease is for life, so I’ve got plenty of time to figure it out. Until I do, I think I’ll stay far away from tattoo parlors. No snakes, unicorns, badgers, or Xed-out sheaves of wheat for my bicep, thank you very much.